Coping Emotionally

Caregiver Burnout and Stress

What is caregiver stress and burnout?
WARNING SIGNS
What causes caregiver stess and burnout?
How can I deal with my stress and burnout?
When should I talk to my doctor?

 


What is caregiver stress and burnout?

Taking care of another person can be stressful. Everyone has some stress, but too much can harm your health, relationships, and enjoyment of life. Caregiver stress happens when you don’t have time to do all that’s asked or expected of you. You may feel like no matter what you do it’s not enough, or like everything is on your shoulders. Caregiver burnout happens when you are in a state of stress or distress for a prolonged period of time. Caregiver stress and burnout can affect your mood, and make you feel tense, angry, anxious, depressed, irritable, frustrated, or fearful. It can make you feel out of control, unable to focus, unsatisfied with work, or lonely. Caregiver stress and burnout can also cause physical symptoms like sleep problems, muscle tension (back, shoulder, or neck pain), headaches, stomach problems, weight gain or loss, fatigue, chest pain, heart problems, hair loss, skin problems, or a colds and infections. It can lead you to abuse alcohol or other substances.

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WARNING SIGNS

Get help from a healthcare provider if you are:

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What causes caregiver stress and burnout?

These things can lead to caregiver stress or make it worse:

  • Fear & uncertainty: Cancer treatment isn’t certain. It’s hard not to worry about the person with cancer, and the future.
  • Shifting roles: Caregiving can change relationships. This isn’t bad. But, it can be upsetting when someone who has been a source of strength is suddenly vulnerable, or when you find yourself making decisions somebody else used to make.
  • Too much to do: As a caregiver, you may feel overwhelmed by all you have to do, and as though everything is falling on your shoulders.
  • Financial pressure: The costs of cancer care can be a source of stress. Also, you and the patient may be unable to work full-time—or at all.
  • Loneliness & isolation: Caregiving takes time. You may find you don’t have time to spend with friends, take part in outside activities, or pursue hobbies.
  • Little time alone: Everyone needs time for themselves. This can be difficult to get when you are caring for someone with cancer.
  • Constant demands: Being on call around-the-clock can be especially hard.
  • Guilt: You may feel bad that you can’t give more, or you may feel that you are short-changing other family members and friends.

While all these things are common among caregivers, there are things your can do to lessen your stress.

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How can I deal with my stress and burnout?

Here are some tips for dealing with your caregiver stress or burnout:

  • Recognize the warning signs of stress early. Never dismiss your feelings as "just stress."
  • Ask for help with caregiving and accept it! Make a list of everyone who may be able to help you out. Make a list of the things that can be done by other people like running errands. Then, ask others to do things for you.
  • Talk to someone—a friend, counselor, family member, or clergy member.
  • Talk to a professional if your stress is becoming a problem.
  • Take care of yourself. Eat well, drink enough water and other fluids, and try to get some exercise every day, even if it’s just a walk around the neighborhood. Get regular medical and dental checkup.
  • Identify sources of stress, and write them down. Think about the things you can improve. Try prayer and/or meditation to accept the things you can’t change.
  • Give yourself permission to grieve, cry and express your feelings.
  • Try meditation, yoga, music, or deep breathing to relax.
  • Join a support group like My Cancer Circle, which is especially for caregivers of people with cancer.
  • Focus on the positive. At the end of the day, make a list of the good things that have happened. Give yourself credit for what you’re doing. Forgive yourself when you don’t do things as well as you want. Remember that you are doing the best that you can.
  • Take time for yourself. Ask a friend or family member to stay with the patient or hire someone to give you time off to shop, go to a movie, or visit a friend.
  • Learn to say "no" when someone asks you to do something that you don’t want to do, and/or that may be draining (like hosting a holiday meal).
  • Educate yourself. Get information from your doctor, the Internet, local library, book stores, or local support groups. This may help with feelings of uncertainty. You’ll find a list of valuable resources here.
  • Find someone who can help you understand all of the medical information. This could be a healthcare professional, someone in a support group, or someone who has been through the same thing. Keep a list of questions to discuss with the patient’s healthcare providers.
  • Make a list of priorities for each day. Set realistic goals.
  • Write about what you’re going through in a journal. This is especially helpful for feelings that you don’t want to share.
  • Try to plan for legal and financial matters. Planning now will lessen stress later. Involve other family members in these activities and decisions.

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When should I talk to my doctor?

Call your doctor or 911 immediately if you feel like you could hurt yourself or someone else.

Also, talk to your doctor if you are:

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Next learn about…

Getting help with caregiving
Avoiding substance abuse
Eating well
Getting exercise

 

Article Topics: 

Getting Caregiver Help

Why is it important to ask for and accept caregiver help?
How can others help me with caregiving?
When and how do I ask for caregiver help?

 

 


Why is it important to ask for and accept caregiver help?

Caring for someone with cancer can be hard. As a caregiver, you are at increased risk of emotional, mental, and physical problems. You may feel stress, anger, anxiety, depression, fatigue, loneliness, and uncertainty. Some caregivers find it difficult to ask for help. You may feel embarrassed or like you’re imposing on others. But getting caregiver help is important—for both for you and the person you are caring for.  

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How can others help me with caregiving?

There are lots of ways people can help caregivers. Ask them to:

Emotional support

  • Spend time with the patient so you have time to take care of yourself.
  • Give you a chance to talk through any feelings you have of anger, anxiety, sadness, fatigue, fear, and loneliness.  
  • Help you find help if you’re struggling with stress, overload, substance abuse or other issues.
  • Spend time with your family, and get you out of the house (if possible).
  • Have a positive attitude. It is catching!

Daily chores & activities

  • Shop for groceries, medications and other things.
  • Prepare meals for your family or help you plan meals.
  • Keep track of the patient’s medications and refills.
  • Help with yard work, dishes, laundry and other household chores
  • Help with transportation, including driving or organizing rides.
  • Walk or feed your pet.
  • Exercise with you—even if it’s just a short walk.
  • Help sort and pay bills.

Communications

Money

  • Help with insurance, including figuring out coverage, getting any needed pre-approvals for treatment, keeping track of payments, reimbursement and communications.
  • Research any prescription assistance and other aid programs.

Other

  • Help you research treatment options and understand what to expect.
  • Prepare a travel pack for the patient to take to treatment.
  • Make sure the patient’s home is safe.

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When and how do I ask for caregiver help?

It is never too early to ask for help. If you can, ask before you need it. This has the added benefit of giving others time to plan.

Start by asking the person you’re taking care of to help you make a list of friends, family and anyone else who might lend a hand. Don’t overlook people you may not know well. People at your church, school or work may want to help. Next, call the people on your list, and ask if they are willing to pitch in. Even if you don’t end up needing their help, it will be good to know it’s there just in case.

Remember that many people do want to help, but don’t know what they can do. Tell them exactly what you’d like. For example, “Can you take Joe for a lab draw on Monday morning before 9am?”

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Next learn about…

Making a caregiving plan
Talking with family & friends
Family meetings

Article Topics: 

Making a Caregiving Plan

What is a Caregiving Plan?
How do we make a Caregiving Plan?
What do we need to think about when making a Caregiving Plan?

 

 


What is a Caregiving Plan?

A Caregiving Plan lays out what needs to be done to manage the health and well-being of the patient. Unlike the doctor’s “plan of care,” the Caregiving Plan addresses mostly non-medical issues. A Caregiving Plan can help you line up outside help ahead of time, avoid schedule conflicts, improve communication, and reduce caregiver stress and overload.

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How do we make a Caregiving Plan?

To make a Caregiving Plan:

  1. Prepare
    Talk to the patient about the level of care he or she thinks will be needed. The person receiving care should have the biggest voice unless he or she is mentally or physically unable.
  2. Pull your team together
    Make a list of everyone who wants to help, including family members, close friends, health professionals, home care workers and others in the community.
  3. Take stock of the situation
    See the section below on areas you need to think about. Remember that the level of care needed can change. The person with cancer may only need help for brief periods of time like after surgery or chemotherapy. Or, he or she may need constant or almost-constant care. People who are not able to recover will likely need more help as time passes.
  4. Have a family meeting
    Learn more about planning a family meeting.
  5. Make the Plan
    Once you have put together your team, and considered the patient’s needs, it is time to sit down with all the players and put your Caregiving Plan together. The written Plan should include:
    • Contact information for all the patient’s healthcare providers
    • Contact information for the caregiving team
    • A caregiving schedule
    • A list of assigned tasks (for example, “Laundry: Rebecca, Tuesday evenings”)
    • A list of the patient's medications and instructions
    • Other important medical information
    • Instructions for what to do in an emergency
  6. Take action
    Make sure everyone has a copy of the Plan. Then check-in with each other regularly to make sure things are getting done. The care team should assign a point person for each area of care. This doesn’t mean that person has to do everything in that area—just that he or she is responsible for seeing to it that those tasks are done. As things change, be sure to update the Plan.

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What do we need to think about when making a Caregiving Plan?

You’ll want to do look at how the patient is doing in these areas:

Physical health & medication

Is the patient able to see and hear well? Does the person need professional nursing care to manage wounds, drains, catheters or other medical equipment? Does he or she have other diseases that need to be managed like diabetes, high blood pressure, arthritis or emphysema? What medication is the patient taking? Does the patient need assistance taking medication or remembering to take medication?

Mental health

Does the patient have any mental health issues like depression, anxiety or psychosis? Should he or she be seen by a mental healthcare professional?

Everyday activities

Does the patient have problems with incontinence (inability to control urine or bowel movements)? Can he or she move around safely and comfortable? Can he or she dress, bathe, shave, brush teeth, wash hair, use a toilet, and use the phone without assistance? Can the person get help in an emergency, shop, prepare meals, do housework, yard work, and/or drive safely? Does the patient have any eating issues?

Home safety

Are there any hazards in the home? What type of yard and house maintenance is needed? Are there stairs? Can the patient manage these? Are there grab bars in the bathroom? Are these needed? If the person with cancer lives alone, is there an emergency call system in place? (Learn more about home safety.)

Finances

Can the patient manage his or her affairs, including paying bills? What is the patient earning and spending? What are his or her income sources (e.g. Social Security, pensions, salary, investments, etc.)? How long will his or her savings last? Are there any other sources of financial assistance? Where are important financial documents—like the car and home title and insurance policies—stored?

Insurance

What insurance coverage does the patient have? Medicare? Medicaid? Private insurance? Does the patient have long-term care insurance, supplementary insurance or life insurance? Does insurance cover "non-medical" personal care? Has the patient been told that insurance won't cover medical tests or procedures that the doctor has ordered?

Legal

Does the patient have a will, trust, advance directive, or living will? Have they signed a healthcare proxy or power of attorney? Do the primary caregiver and/or caregiving team have access to these?

Interests & lifestyle

What are the patient’s hobbies? Does he or she belong to a church or other faith-based group? Does he or she get out of the house for social reasons? Get visitors at home? Do family members live close by? Is there someone from the patient’s faith community that can drive them to services?

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Next learn about…

Transportation
Medication management
Emergency preparedness
Home safety

Article Topics: 

Work

How can caregiving affect my work?
How can I deal with working and caregiving?
What is the Family Leave Medical Act (FLMA)?



 


How can caregiving affect my work?

Many people find it hard to balance work and caregiving. Medical appointments and other tasks can interrupt your work day. You may be sleeping poorly or distracted by feelings of anger, depression, or anxiety. You may find yourself working few hours or not as well.

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How can I deal with working and caregiving?

Here are some suggestions:

  • When possible, try to schedule the patient’s medical appointments and other caregiving jobs during breaks or lunchtime.
  • Ask your supervisor about your company’s policy regarding caregivers. Find out if your employer allows flex-time and/or alternative work schedules.
  • Offer to work an unpopular shift in exchange for flex-time.
  • Many large employers have an Employee Assistance Program (EAP). Ask your boss what support services are available. If your company doesn't have an EAP, talk with the human resources (HR) department.
  • It is usually more trouble for your employer to replace you than help you make it work. If you are thinking of quitting, talk with your boss first. He or she may be more willing to help than you think.
  • If you work for a company with more than 50 employees, ask for information on the Family Medical Leave Act (FMLA).
  • Consider your job as an opportunity to take a short break from caregiving. A recent study showed that working family caregivers do better than non-working caregivers.

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What is the Family Medical Leave Act (FMLA)?

The FMLA gives you the right to take time off work without losing your job if you are ill or caring for an ill family member.

The FMLA:

  • Applies to workers at all government agencies and schools nationwide, as well as private companies with 50 or more employees within 75 miles of the work site.
  • Guarantees that eligible employees can take up to 12 weeks of unpaid leave, which can be used all at once or in increments as short as a few hours at a time (in the event an employee wants to work part-time or needs time off for appointments).
  • Guarantees that eligible employees maintain their health insurance benefits while out on leave.
  • Guarantees that an employee who returns to work will be given his or her previous position or an equivalent job with the same salary, benefits and other conditions of employment.
  • Covers employees who have worked for their employer for at least 12 months, including at least 1,250 hours during the most recent 12 months.

For more information: FMLA web page (U.S. Department of Labor)

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Next learn about...

Money
Transportation
Making a caregiving plan

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Anger

What is caregiver anger?
What can I do about my anger?
When should I talk to my doctor about my anger?

 

 


What is caregiver anger?

Many caregivers feel angry at some point. They may curse, yell, get irritated, withdraw, or even get physically sick. Caregiver anger usually comes from feeling out of control, overwhelmed, anxious, scared, tired or stressed. As a caregiver you may feel angry that others are not helping enough, or angry at yourself for not doing more. You may feel that the situation is unfair and/or too much.

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What can I do about my anger?

Here are some tips for dealing with your anger:

  • Get help with caregiving.
  • Talk to someone. Try not to hide your feelings. Sharing how you feel helps others understand, and gives them a chance to help.
  • Recognize when you’re angry.
  • Explore what’s causing the feeling. There may be perfectly good reasons you’re upset.
  • Remove yourself from the situation. Take a short break when you need to.
  • Find someone that you can talk to about your feelings. This could be a trusted friend or a mental healthcare professional.
  • Try to avoid lashing out at others.
  • Try putting yourself in the other person's shoes.
  • Use your anger to motivate you to take action.
  • Find a support group for caregivers.
  • Ask friends and family to distract you when you’re angry.

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When should I talk to my doctor about my anger?

Call 911 or your health provider immediately if you feel you might harm yourself or someone else.

Also contact your healthcare provider if you:

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Next learn about...

Getting help with caregiving
Talking with family & friends
Avoiding substance abuse

Article Topics: 

Anxiety

What is caregiver anxiety?
What can I do about my anxiety?
When should I talk to my doctor about my anxiety?

 

 


What is caregiver anxiety?

Anxiety is a feeling of uneasiness, discomfort or impending doom. It is common for people taking care of someone with cancer to experience anxiety. It can be caused by a loss of control, fear for the patient’s well-being, worry over family finances, uncertainty about the future, and feelings of being overwhelmed.

Caregivers with anxiety can have physical and emotional symptoms. Emotionally, you may feel tense, worried, wary, agitated, or distracted. Physically, you may tremble, sweat, or shake. You may be short of breath, have a rapid heart rate, or feel like your heart is pounding in your chest. You may have an upset stomach, headaches, loss of appetite, nausea, or difficulty sleeping.

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What can I do about my anxiety?

Here are some tips you may find helpful:

  • Get help with caregiving.
  • Try to identify what "triggers" your anxiety.
  • List things that have helped in the past, and then try them out.
  • Talk about your feelings with others. Be honest. Try to describe your how you're truly feeling. Ask your family and friends for ideas on managing your anxiety.
  • Try to find a support group or online forum for caregivers.
  • Learn about the patient’s type of cancer, treatment and what to expect. You can research this yourself or ask someone to do it for you.
  • Do things you enjoy or find distracting, like listening to music.
  • Try using controlled breathing or guided imagery to relax. Consider asking a friend to help with this.
  • Surround yourself with friends if that relaxes you.
  • Try prayer or meditation.
  • Get exercise. For example, go for a walk with a friend.
  • Get a massage.
  • Limit caffeine, including coffee, colas, black teas, and chocolate.
  • Avoid alcohol.
  • Ask your doctor for a counseling referral, or talk to him or her about medications for anxiety.

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When should I talk to my doctor about my anxiety?

Talk to your doctor if you have:

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Next learn about...

Getting help with caregiving
Coping with fear & uncertainty
Talking with family & friends

Article Topics: 

Depression

What is caregiver depression?
What can I do about my depression?
When should I talk to my doctor about my depression?



 


What is caregiver depression?

Depression is deep sadness that lasts more than two weeks, and gets in the way of daily activities. If you are depressed or have depressive symptoms, you may cry often, have problems sleeping, eat too much or too little, feel hopeless, helpless, sad, guilty, worthless, and/or sluggish. You may have trouble feeling pleasure, or find yourself pulling away from family and friends. You may even want to hurt yourself. (Call your doctor immediately if you do.)

Feeling sad is normal when dealing with cancer. People can usually deal with this short-term. But, ongoing feelings of depression need to be treated with counseling and/or medication. Caregiver stress and overload can put you at risk of depression. Studies have shown that caregivers have higher levels of depression than non-caregivers.

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What can I do about my depression?

Here are some tips for dealing with depression:

  • Don’t be afraid to ask for help. Talk to a healthcare provider if your depression lasts more than two weeks. Tell your doctor exactly how you feel, and what medications you are taking. Ask for a referral to a psychologist, clinical social worker, counselor and/or support group.
  • Know the symptoms of depression, and recognize if you have them.
  • Get help with caregiving so you have time for yourself.
  • Try to understand what’s causing your depression.
  • Talk to friends or family. Try to describe your feelings and how they are affecting you. Ask your family and friends for ideas to help you deal with your depression.
  • Avoid being isolated. Join a support group.
  • Talk to a counselor, pastor, priest, or psychologist.
  • Cry and express your feelings. You can do this with a friend or use a journal.
  • Try meditation, massage, and relaxation exercises.
  • Try focusing on something other than how you feel.
  • Find a creative outlet like cooking, dance, painting, or music.
  • Avoid alcohol.
  • Eat well. Get help if you are having eating problems.
  • Get enough sleep.
  • Do something that brings you pleasure each day.
  • Be around other people in restful, relaxing situations.
  • Get exercise, and spend time outside.
  • Ask family and friends to stay with you during difficult times, check in with you often, do enjoyable activities with you, and help with stressful tasks like doctor visits, bill paying or household chores.
  • If you are prescribed medication for depression, take it as directed.

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When should I talk to my doctor about my depression?

Call 911 or your doctor immediately if you feel you might harm yourself or someone else, and/or call a regional suicide hotline.

Contact your doctor if you experience any of these symptoms most of the time for two or more weeks:

  1. Depressed mood every day for most of the day
  2. Little interest or pleasure in most activities
  3. Noticeable weight loss or gain or a major change in appetite
  4. Sleep problems
  5. Agitation or the feeling of being “slowed down”
  6. Excessive tiredness or lack of energy
  7. Feelings of worthlessness or guilt
  8. Inability to concentrate or make decisions
  9. Frequent thoughts of death or suicide

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Next learn about…

Getting help with caregiving
Coping with loneliness & isolation

Talking with family & friends

Article Topics: 

Fatigue

What is caregiver fatigue?
What can I do about my fatigue?
When should I talk to my doctor about my fatigue?

 

 


What is caregiver fatigue?

Fatigue is an overwhelming sense of tiredness. If you are fatigued, you may have little energy to do the things you normally do—even if you are getting enough sleep. You may feel tired all the time, weak, worn-out, slow, or heavy. You may also feel sad, irritable, and frustrated. Fatigue can affect your quality of life, mood, relationships, and performance.

Caregivers are at risk of fatigue from emotional stress, overload, poor sleep, poor nutrition, and not enough exercise.

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What can I do about my fatigue?

Here are some tips:

  • Get enough sleep.
  • Get help with caregiving and household chores so you can take breaks.
  • Nap no more than 30-45 minutes in the late morning or early afternoon.
  • Stay active during the day. Get at least 15 minutes of exercise every day.
  • Try not to overload your daily to-do list.
  • Make time for things you enjoy.
  • Eat well. Have healthy snacks around, like a bowl of fruit, vegetables, or cheese. Avoid fatty and fried foods especially at bedtime.
  • Drink water or beverages without caffeine to keep hydrated.
  • Avoid caffeine after 3pm, including coffee, colas, black teas, and chocolate.
  • Try relaxation exercises or meditation.
  • Join a support group. Support groups can provide suggestions and reassurance in a safe environment.
  • Talk to others about your fatigue.

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When should I talk to my doctor about my fatigue?

Talk to your doctor if you are:

  • Unable to get out of bed for 24 hours
  • Having a hard time focusing while talking, reading, watching TV, etc.
  • Unable to do your usual daily activities
  • Have severe chills or sweats
  • Have a temperature above 100.9 F (38.3 C) or a temperature higher than 100.4 F (38.0 C) that lasts for more than an hour
  • Are short of breath

Also let your doctor know:

  • When your fatigue started
  • If it’s gotten worse
  • What helps or makes it worse
  • How it affects your activities

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Next learn about...

Getting help with caregiving
Talking with family & friends
Coping with sleep problems

Article Topics: 

Fear & Uncertainty

What is caregiver fear and uncertainty?
What can I do about my fear and uncertainty?
When should I talk to my doctor about my fear and uncertainty?

 

 


What is caregiver fear and uncertainty?

Uncertainty is the inability to know what will happen in the future. Cancer and cancer treatment can be scary and unpredictable. Feelings of fear and uncertainty among caregivers are normal. But, they can become a problem if the caregiver feels he or she has no control over life, or is overly anxious, angry, depressed, or stressed as a result.

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What can I do about my fear and uncertainty?

Here are some tips:

  • Don’t try to deny your fear. Talk about it with a friend or counselor.
  • Try to avoid thinking about "what if's." Focus on the aspects of your life that you have control over.
  • Try not to let your emotions and fears sway your decisions. Seek out the information you need to make good decisions. Ask a friend to help with the research.
  • Talk to the patient’s healthcare provider about what to expect. Then prepare to the best of your abilities.
  • Give your mind a break. Distract yourself with a book, a movie or a friendly conversation, or ask a friend to spend time with you doing something fun.
  • Figure out what helps you manage stress, and do it.
  • Find a support group.
  • Write down a list of things you’re thankful for. Look at it when you’re feeling scared.

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When should I talk to my doctor about my fear and uncertainty?

Talk to your doctor if you have:


Next learn about...

Getting help with caregiving
Talking with family & friends
Coping with caregiving

Article Topics: 

Loneliness & Isolation

What is caregiver loneliness and isolation?
What can I do about my loneliness and isolation?
When should I talk to my doctor about my loneliness and isolation?

 

 


What is caregiver loneliness and isolation?

Isolation happens when a person does not spend time with other people enjoying themselves. Caregivers have a lot to do. There are bills to pay, people to call, prescriptions to pick up, and appointments to go to. You may lose track of friendships and stop having a social life because of caregiving duties. This isolation can make you feel lonely, depressed, or sick.

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What can I do about my loneliness and isolation?

Staying in contact with people other than the patient is important. These connections can promote happiness, better sleep, and better health.

Here are some tips for avoiding isolation:

  • Do a little something for yourself each day. If you can’t take an afternoon off with a friend, schedule a daily phone “date” with someone.
  • Ask family members and friends to understand that even though you may be busy, you need and want them to reach out. Ask them to check in with you even if you can’t return their calls right away. Ask them to keep inviting your out even if you often have to say no.
  • Invite friends, family and church members over to visit, take a ride, go for a walk, or eat out.
  • Join a support group in-person or online.
  • Get help with caregiving so you can get out of the house for a little while.
  • Don’t feel guilty! Making time for others does not mean you’re short-changing the person you are caring for.
  • Take the time to call and catch up with those friends and family with whom you have lost touch.
  • Accept invitations to social gatherings.
  • If you have a hobby, do it for a little while every day.
  • Rent a movie. Go to a play or concert. Go out to lunch. Take a walk.
  • Take a class to learn about something that interests you.

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When should I talk to my doctor about my loneliness and isolation?

Talk to your doctor if you are:


Next learn about…

Getting help with caregiving
Talking with family & friends
Avoiding substance abuse

Article Topics: 
This website was created to provide information, education, and support that will help cancer caregivers care for themselves and their family members. It is not meant as medical advice. Please check with your physician for any advice about your health.